Monday, March 28, 2016

Gov. Pence and Christian Legislators Have Enacted a New Law That Has a Dangerous, Discriminatory Impact on Jewish Hoosiers

Have you ever heard of Tay-Sachs disease? If not, I’m not surprised. It’s a very rare illness with which few people much familiarity. But that isn’t true for Jews of European ancestry (Ashkenazi Jews) who are intimately familiar with the illness. Approximately 1 in 27 Ashkenazi Jews is a Tay-Sachs carrier which is why many Jewish couples, before marrying, are tested to see if they are carriers.

A baby with Tay-Sachs disease appears healthy at birth, and seems to be developing normally for a few months. Symptoms generally appear by six months of age. While symptoms vary from one child to the next, there is always a slowing down of development. Gradually, Tay-Sachs children lose motor skills and mental functions. Over time, the child becomes blind, deaf, mentally retarded, paralyzed and non responsive to the environment. Tay-Sachs children usually die by age five.

The First Signs – A baby with classic Infantile Tay-Sachs appears normal at birth and typically continues to develop normally for the first six months of age. Around 6 months of age, development slows. Parents may notice a reduction in vision and tracking and the baby does not outgrow normal startle response.

A Gradual Loss of Skills - Infantile Tay-Sachs children gradually regress, losing skills one by one. Over time they are unable to crawl, turn over, sit or reach out. Other symptoms include loss of coordination, progressive inability to swallow and difficulty breathing.

By Age 2 and beyond - Most children experience recurrent seizures by age 2 and eventually lose muscle function, mental function and sight, becoming mostly non-responsive to their environment.

The prognosis for a child born with Tay-Sachs is, to say the least, bleak:

There is currently no cure or treatment for Tay–Sachs disease. Even with the best care, children with infantile Tay–Sachs disease die, usually by the age of 4. Although experimental work is underway, no current medical treatment of the root cause yet exists. Patients receive supportive care to ease the symptoms and extend life by reducing the chance of contracting infections. Infants are given feeding tubes when they can no longer swallow. Improvements in life-extending care have somewhat lengthened the survival of children with Tay–Sachs disease, but no current therapy is able to reverse or delay the disease's progress.

Thus, it should come as no great surprise that Jewish couples* who learn that a fetus has the genetic mutation that causes Tay-Sachs may choose to abort the pregnancy. And, it is worth noting that many Jewish authorities accept the idea of abortion in the case of a fetus with this sort of genetic mutation. Allow me to quote from one of the first posts I wrote for this blog (“Keep Your Religious Doctrine Out of My State's Laws”, January 25, 2008, on the subject of a bill that would have defined the beginning of “human physical life”):

According to Jewish law and tradition, a fetus is not a person. According to the Talmud, the fetus is deemed to be a component of the pregnant woman's body, no different from her thigh. Moreover, Jewish rabbis and scholars have been debating, literally for millennia, when “ensoulment” occurs. Even after this millennia of debate, no firm answer or opinion has emerged; thus, this is one of those issues of faith that is viewed as one of the “secrets of G-d”. …

It is also absolutely critical to understand that according to Jewish law, the life of the mother takes precedence over the life of the fetus until birth. Allow me to quote, in part, some of the testimony offered in the Indiana House of Representatives in 2006 by Rabbi Dennis C. Sasso (with regard to another abortion-related bill):

Writing into state law what is essentially the doctrinal view of a particular segment of the faith community would impair the freedom of religion of Hoosier citizens whose religious traditions and ethical stances call them to a different understanding of when does human personhood begin. It is regrettable use of political and religious ideology to trump science, threaten pluralism, assault tolerance and encroach on the privacy of citizens.

The issue is not “When does life begin?” Life exists even before conception. The sperm is life. The ovum is life. Every cell and organism is a living entity. Adherents of the Eastern faith, Jainism, gently sweep the path in front of them as they walk in order to avoid stepping on living creatures.

The issue is not “when does life begin”, but when is human personhood, that intangible moral and legal category upon which hinge so many privileges and responsibilities of identity and citizenship, established. And on this issue, science offers no answers and theologians and ethicists have and will continue to differ.

While some people of faith may choose to affirm that human personhood begins at conception, at the moment when the ovum and sperm meet, Judaism affirms that personhood begins at birth. In a contest between the fetus and the mother, the Jewish moral tradition will not only permit, but require, that preference be given to the mother.

Until birth, while the fetus is certainly to be cherished and protected, it is not considered an independent legal entity. Judaism honors and protects the fetus. Ours is a tradition that celebrates parenthood and family, but in a contest between the embryo or the fetus and the mother, Judaism preeminently protects the rights of the mother as a viable human person. Both her physiological and psychological needs are to be given preferential status over the rights of the developing fetus.

I want to be clear that on this matter there is universal consensus among all Jewish denominations, from the most liberal Reform to the Conservative, Reconstructionist and most traditional Orthodox.

The Rabbinate of the Orthodox Movement, has spoken as follows:

Judaism … rejects the Catholic or fundamentalist view of abortion, particularly in those cases in which the life, physical or even mental well being of the mother is threatened…. When the life of the mother is threatened, Jewish law unambiguously prefers the life of the mother. Even when the health of the mother is threatened most authorities would permit an abortion before the onset of labor because the fetus has not yet reached an independent status.

We are fearful, therefore, of government interference with the freedom of the Jewish community to apply its time venerated Torah standards to the question of abortion. The intrusion of government into an issue which so often can be determined only by religious consciousness would involve a grave violation of the first amendment.

Why do I mention all of this? Because Indiana Gov. Mike Pence and a group of almost exclusively Republican, Christian, male legislators have have written, passed, and signed a new law (House Enrolled Act 1337) that would prohibit a Jewish couple who learns that their fetus has the genetic mutation that will cause Tay-Sachs from seeking an abortion. Gov. Pence and Indiana legislators have allowed their religious views and understanding of core questions concerning the beginning of life to be enacted into law in a way that will have concrete and severe impact upon one particular minority community that both suffers from a propensity to a disease and who has a different religious understanding of when and under what circumstances abortion is permitted.

Indiana law already erects numerous barriers that make it very difficult for a woman to get an abortion. But House Enrolled Act 1337 goes even further:

(a) A person may not intentionally perform or attempt to perform an abortion before the earlier of viability of the fetus or twenty (20) weeks of postfertilization age if the person knows that the pregnant woman is seeking the abortion solely because the fetus has been diagnosed with Down syndrome or has been diagnosed with any other disability or has a potential diagnosis of any other disability.

(b) A person may not intentionally perform or attempt to perform an abortion after viability of the fetus or twenty (20) weeks of postfertilization age if the person knows that the pregnant woman is seeking the abortion solely because the fetus has been diagnosed with any other disability or has a potential diagnosis of any other disability.

Indiana Code § 16-34-4-7.

For the purpose of this new law, “any other disability” is defined as “any disease, defect, or disorder that is genetically inherited” and specifically includes (among other things) physical disabilities, mental or intellectual disabilities, physical disfigurement, and physical or mental disease. Moreover, the term “potential diagnosis” means the “presence of some risk factors that indicate that a health problem may occur”. You know, risk factors like being an Ashkenazi Jew who has a 1 in 27 chance of being a Tay-Sachs carrier. Thus, one could argue that a doctor could never perform an abortion for an Ashkenazi Jewish woman because of the presence of risk factors that indicate a problem “may occur”. For that matter, how many women don’t have “some risk factors”? Can a doctor perform an abortion on a woman that he knows smokes or has HIV/AIDS?

House Enrolled Act 1337 does allow abortions for disabilities if the disability is a “lethal fetal anomaly” which is defined as a “fetal condition diagnosed before birth that, if the pregnancy results in a live birth, will with reasonable certainty result in the death of the child not more than three (3) months after the child’s birth.” Obviously, Tay-Sachs, though always fatal, does not fit within the definition of “lethal fetal anomaly” because a child with Tay-Sachs will usually live for 4 or even 5 excruciating years. It is also worth noting that House Enrolled Act 1337 provides for “perinatal hospice” that includes “counseling and medical care provided by maternal-fetal medical specialists, obstetricians, neonatologists, anesthesia specialists, specialty nurses, clergy, social workers, and others that are focused on alleviating fear and ensuring that the woman and her family experience the life and death of the child in a comfortable and supportive environment.” However, that perinatal hospice is only available in the case of a lethal fetal anomaly, not for a fatal disease like Tay-Sachs. I guess that parents of a child with Tay-Sachs don’t need a supportive environment or counseling as they watch the child that the state mandated they give birth to wither through a painful existence to its eventual death.

Not every family can afford to care for and raise a child with a disease like Tay-Sachs. Not every family can put aside everything, including the well-being of the rest of the family, for the intense efforts necessary to care for a child with Tay-Sachs. Not every family has the mental fortitude to work through life with a Tay-Sachs child. And what about the child: “Blind, deaf, mentally retarded, paralyzed and non responsive to the environment.” We couldn’t condemn anyone to that sort of “life”. But the State of Indiana has decided to mandate that Jewish families who learn that a fetus has the genetic defect that will cause Tay-Sachs are … stuck. The State of Indiana has even given doctors a reason to fear performing any abortions if there are “risk factors” for a health problem. So, even if a family’s religious views would permit an abortion, the State of Indiana has decided that the religious interpretation of one group of one religious tradition takes precedence.**

Perhaps our Governor and legislators didn’t understand the impact House Enrolled Act 1337 would have on Jewish families. Of course, had they not rushed the bill through, without hearing testimony in committee, then perhaps these concerns could have been discussed. Or, perhaps, in their anti-abortion (or, as some have started to refer to it, their “pro-birth”) zeal, they simply don’t care. They know what they believe and they have the power of the majority to impose those beliefs upon the rest of us.

In any event, it is time for Hoosiers to stand up to those who seek to enforce their religious views by force of law. It is time to reclaim Indiana as a welcoming pluralistic society and not some kind of 16th Century theocracy. And it is time for Jewish Hoosiers to make their voices heard — loudly — to let our Governor and legislator know that we will no longer stand for their efforts to make us second class citizens in our own state.

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*To be clear, Ashkenazi Jews are not the only people who carry the mutation that leads to Tay-Sachs, though it is most common in Ashkenazi Jews. The genetic mutation is also found at rates higher than the general population in Cajuns from Louisiana, French Canadians from eastern Quebec, and Acadians from New Brunswick, Canada.

**I want to relate an interesting thought experiment I encountered on Twitter recently (though, sadly, I failed to save the link so I can’t give proper attribution): Imagine that you are standing in front of a cliff. On the edge of the cliff are an infant and a petri dish with a fertilized human egg. Now imagine that the edge of the cliff begins to give way and both the infant and petri dish will fall over the cliff. You can save the infant or the petri dish, but not both. Which will you save? The answer is obvious, isn’t it? So why do people like Indiana’s Republican legislators want to continue to treat the fertilized egg and the infant as being the same when, quite clearly, they are not?

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